Abstract
Objective: To investigate the concept of hope for families and pediatric health care professionals during a child's serious illness. Design: Eight focus groups. Setting: Academic pediatric medical center. Participants: Bereaved parents, pediatricians, pediatric residents, and nurses (N=39). Intervention: Participants were asked standardized questions related to their definition of hope, its role in medical decisions, and the benefits and detriments of hope in focus group sessions. Main Outcome Measures: We identified attributes of participants' concepts of hope using qualitative analysis of audio-taped sessions. Results: While all participants identified common elements in their definition of hope, parents identified their role as bearers of hope; it was a cornerstone of decision making. Health care professionals tended to view hope as related to a positive outcome. Some physicians reported difficulty in maintaining hope in the face of prognostic data; others acknowledged the importance of the family's hope. Nurses identified particular challenges around parents' decisions to continue treatment when it prolonged the child's suffering. All participants noted the changing nature of hope and its implications for care. Conclusions: The tension between maintaining hope and accepting the reality of the prognosis may lessen when acknowledging that parents see their role as bearers of hope. Supporting families around the changing nature of hope may allow health care professionals to partner with parents while maintaining honest communication.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 653-657 |
| Number of pages | 5 |
| Journal | Archives of Pediatrics and Adolescent Medicine |
| Volume | 163 |
| Issue number | 7 |
| DOIs | |
| State | Published - Jul 2009 |
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ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health
Cite this
Until the last breath : Exploring the concept of hope for parents and health care professionals during a child's serious illness. / Keene Reder, Elizabeth A.; Serwint, Janet Rose.
In: Archives of Pediatrics and Adolescent Medicine, Vol. 163, No. 7, 07.2009, p. 653-657.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - Until the last breath
T2 - Exploring the concept of hope for parents and health care professionals during a child's serious illness
AU - Keene Reder, Elizabeth A.
AU - Serwint, Janet Rose
PY - 2009/7
Y1 - 2009/7
N2 - Objective: To investigate the concept of hope for families and pediatric health care professionals during a child's serious illness. Design: Eight focus groups. Setting: Academic pediatric medical center. Participants: Bereaved parents, pediatricians, pediatric residents, and nurses (N=39). Intervention: Participants were asked standardized questions related to their definition of hope, its role in medical decisions, and the benefits and detriments of hope in focus group sessions. Main Outcome Measures: We identified attributes of participants' concepts of hope using qualitative analysis of audio-taped sessions. Results: While all participants identified common elements in their definition of hope, parents identified their role as bearers of hope; it was a cornerstone of decision making. Health care professionals tended to view hope as related to a positive outcome. Some physicians reported difficulty in maintaining hope in the face of prognostic data; others acknowledged the importance of the family's hope. Nurses identified particular challenges around parents' decisions to continue treatment when it prolonged the child's suffering. All participants noted the changing nature of hope and its implications for care. Conclusions: The tension between maintaining hope and accepting the reality of the prognosis may lessen when acknowledging that parents see their role as bearers of hope. Supporting families around the changing nature of hope may allow health care professionals to partner with parents while maintaining honest communication.
AB - Objective: To investigate the concept of hope for families and pediatric health care professionals during a child's serious illness. Design: Eight focus groups. Setting: Academic pediatric medical center. Participants: Bereaved parents, pediatricians, pediatric residents, and nurses (N=39). Intervention: Participants were asked standardized questions related to their definition of hope, its role in medical decisions, and the benefits and detriments of hope in focus group sessions. Main Outcome Measures: We identified attributes of participants' concepts of hope using qualitative analysis of audio-taped sessions. Results: While all participants identified common elements in their definition of hope, parents identified their role as bearers of hope; it was a cornerstone of decision making. Health care professionals tended to view hope as related to a positive outcome. Some physicians reported difficulty in maintaining hope in the face of prognostic data; others acknowledged the importance of the family's hope. Nurses identified particular challenges around parents' decisions to continue treatment when it prolonged the child's suffering. All participants noted the changing nature of hope and its implications for care. Conclusions: The tension between maintaining hope and accepting the reality of the prognosis may lessen when acknowledging that parents see their role as bearers of hope. Supporting families around the changing nature of hope may allow health care professionals to partner with parents while maintaining honest communication.
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UR - http://www.scopus.com/inward/citedby.url?scp=67650087773&partnerID=8YFLogxK
U2 - 10.1001/archpediatrics.2009.87
DO - 10.1001/archpediatrics.2009.87
M3 - Article
C2 - 19581549
AN - SCOPUS:67650087773
VL - 163
SP - 653
EP - 657
JO - JAMA Pediatrics
JF - JAMA Pediatrics
SN - 2168-6203
IS - 7
ER -